The secret of my sex

Sarah Graham was 25 before she discovered what doctors had withheld from her: that she was both male and female

There are some sentences that we all dread hearing. "You've got cancer" is probably at the top of most people's list. Being told that you can't have children is another. When I was eight, a gynaecologist told my parents this devastating news: that I had a very rare genetic condition and that if my ovaries weren't removed I would develop cancer when I reached puberty and die.

Nearly 20 years later I discovered that my doctors had lied to my parents and me. And this wasn't a one-off - it was standard policy (until the mid-1990s) to hide the truth about all conditions like mine. I was 25 when I found out the extent of the cover-up, and the shock of suddenly being told the true nature of my diagnosis - with no support and after being systematically lied to for so many years - nearly killed me. I went into an emotional meltdown.

The dark secret about my body is that I'm the living embodiment of an apparent contradiction, an XY woman (both female and male). Put simply, my body looks outwardly female but I have male chromosomes and one or two other surprises internally. There are several possible types of intersexuality. It is estimated that as many as 4 per cent of the population are born with an intersex condition. We are a largely invisible oppressed minority, and the fear, fascination and loathing our bodies provoke in modern Western culture has held the power to shame and silence me for years.

In the 20th century, the medical and legal establishment tried their best to erase us from society. Despite nature's love of diversity - a rainbow of sex and possible genders - the paternalistic experts took it upon themselves to try to force everyone into two categories: male and female. Binary boxes. Nothing else is acceptable.

We've heard about "heathen" African tribes who carry out clitoridectomies, but not much has been written about the genital surgery done to babies and young children - to make them look "more normal" - by gynaecologists in Europe and North America. These operations are often for entirely cosmetic reasons and they are frequently damaging to adult sexual responsiveness and/or fertility. Doctors have rules about how big a clitoris can be. And if a baby has a small penis he may be reassigned as female because vaginas are easier to make than functioning phalluses that pass the "locker room test". Ninety per cent of intersex babies emerge from the operating theatre as girls.

This infringement of children's human rights is starting to be challenged. But surgery is still happening. When an intersex baby is born, an "expert" is called to decide which sex to assign it to, and the parents are often pressured to go along with this decision. The parents are then expected to collude with society's rigid socialisation process (pink for a girl, blue for a boy) and not tell their child who they really are.

The battle to survive my painful history and the continuing struggle to be free to think outside of the male/female boxes and to speak up for intersexuals - by challenging the medical and legal hegemony - has been and continues to be the biggest challenge of my life.

My journey began in 1977. For a few months I'd been having some abdominal pain and after various tests I was referred to see a world-eminent gynaecologist (imagine God in a white coat). After being examined by him and what seemed like an army of medical students, he announced to the room that I was a "very special little girl". This proclamation was, it turned out, something of a mixed blessing.

I can remember the pain in my father's voice and my mother crying. At first I didn't understand why they were so upset. But I soon worked out that no ovaries equals no babies. My surgery happened as the Queen was celebrating her Silver Jubilee. I was the only child alone on the ward. I tried to run away, but was caught and held down by the nurses. I soon realised that I had no human rights and this was confirmed when, the night before my op, I was given an enema in front of my mother.

I'd been a happy little girl up until my op but I returned to school a very different child. My experiences in hospital drove me to re-enact with other children - compulsively playing doctors and nurses - and my growing self-hatred and loner behaviour soon attracted a teenager who befriended me and sexually abused me until I was 11.

Having no ovaries meant that I had to take oestrogen hormone pills from the age of 12 and on one of my regular trips to see God, he broke the news that as well as being infertile, I wouldn't be starting periods - "you don't have a womb" and "you may not grow any pubic hair". These shocking statements were delivered as simple matters of fact and then I was left to make sense of them. I couldn't speak to my parents. My shame was too great. Things got worse when I was 14 or 15: my gynaecologist examined me and said my vagina may be too small for comfortable intercourse. He sent me home with a set of NHS dildos (small to very large) with little explanation about how to use them. I felt so freaked that I threw them away.

My gender identity as a girl had never felt like a very good fit. I was a tomboy from a very young age and much preferred Action Man to Tiny Tears. Although I rejected dresses and pig-tails and liked climbing trees, I was interested in boys. But as my teens progressed, I began to feel like I was failing as a woman. Not being able to have children really undermined my self-esteem. I worried a lot about whether a male partner would stay with me if I couldn't give him a family. I was still seeing different gynaecologists twice a year for check-ups and none of them broke ranks and told me the truth.

When I was 17, I was really quite surprised to fall in love with a woman. Coming out as a lesbian was a very happy experience for me. I'd run away from school to be a Greenham Woman and finally I belonged to gang. Later, I moved to London to read anthropology and communications at Goldsmiths College and joined the gay rights action group OutRage!. Derek Jarman and I became very good friends on a demo - lying under a "Gay Rights Now!" banner in the middle of Charing Cross Road. My friendship with Derek got me really thinking about sexuality and gender, and I soon dropped the label "lesbian" in favour of "queer": with its rejection of "heterosoc's" rules. Selfishly, I wish that Derek hadn't died when he did (1994) because it was later that year that a new gynaecologist finally told me the truth. Derek wouldn't have been shaken by my news. He'd have helped me see the positives and challenged the gang of assassins that took over my head.

Even though I was knowledgeable about the cultural construction of sexuality, nothing prepared me to deal with the facts about my rare genetic condition - which is now called Androgen Insensitivity Syndrome (AIS). Being told that on a chromosomal level I am male (XY, not XX) and that the "ovaries" that were removed from me were in fact undescended "testes" was a complete shock. (No, really! On a good day, I can laugh about it now). My body is a 1 in 30,000 genetic fluke and I am nearly completely insensitive to testosterone, so even though I have male chromosomes I didn't develop properly along male lines (all foetuses begin as female and exposure to the mother's testosterone makes the XY baby's body grow male features).

Many XY women are happily heterosexual. For me, my bisexuality and sense that I do embrace both sexes has led me to take part in an interesting experiment this past year. It transpires that the operation I had as a child may not have been necessary - some young XY girls and women today choose to keep their testes and produce hormones naturally. My endocrinologist, Dr Conway, and I have been changing my hormone replacement therapy: from just oestrogen to a mix of both oestrogen and testosterone. It has given me more energy, a better sex drive and I feel more fully alive. Despite being "immune" to testosterone, my body has gone through some physical changes (better muscle tone, more pubic hair, bigger clitoris). Emotionally I have changed, too. I am more aware of my male energy and have cried a lot less. Strangely, I am also feeling much more comfortable with my femaleness than ever before.

I can honestly say I don't regret anything that happened to me - except for the infertility - because it has made me very strong. Through doing a great deal of soul-searching and thinking about "Who Am I?", I have gained an enlightened view of the male/female power struggles and the search for balance.

I'm currently investigating mounting a challenge for proper recognition in law of the right to be called what I am - intersex. I want it to be written on my passport and I want the freedom to marry a woman in church. This campaign for intersex rights will benefit us all. Why should we be forced - by that rigid last-century thinking - into those uncomfortable categories. Surely we will all benefit from being free to roam and not so boxed in?

www.medhelp.org/www/ais/ (Androgen Insensitivity Syndrome Support Group), www.ukia.co.uk (UK Intersex Association), www.isna.org (The Intersex Society of North America)

Intersex facts

Androgen Insensitivity Syndrome is one of a number of rare biological intersex conditions.

People with AIS are born with the XY chromosomes of a male, undescended testes (which may be mistaken for ovaries), and the external genitalia of a female. They are genetically male but appear female.

In a normal XY foetus, the androgens (male hormones) produced by the embryonic testes influence the development of male genitals in the womb. But in AIS, the foetus is unable to use the androgens and instead develops female genitals, while lacking internal female organs like ovaries.

News
people'It can last and it's terrifying'
Sport
Danny Welbeck's Manchester United future is in doubt
footballGunners confirm signing from Manchester United
Sport
footballStriker has moved on loan for the remainder of the season
Sport
footballFeaturing Bart Simpson
PROMOTED VIDEO
Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Life and Style
ebooksFrom the lifespan of a slug to the distance to the Sun: answers to 500 questions from readers
News
Katie Hopkins appearing on 'This Morning' after she purposefully put on 4 stone.
peopleKatie Hopkins breaks down in tears over weight gain challenge
Arts and Entertainment
Olivia Colman topped the list of the 30 most influential females in broadcasting
tv
News
Kelly Brook
peopleA spokesperson said the support group was 'extremely disappointed'
News
The five geckos were launched into space to find out about the effects of weightlessness on the creatures’ sex lives
i100
Life and Style
techIf those brochure kitchens look a little too perfect to be true, well, that’s probably because they are
Sport
Andy Murray celebrates a shot while playing Jo-Wilfried Tsonga
TennisWin sets up blockbuster US Open quarter-final against Djokovic
Arts and Entertainment
Hare’s a riddle: Kit Williams with the treasure linked to Masquerade
booksRiddling trilogy could net you $3m
Arts and Entertainment
Alex Kapranos of Franz Ferdinand performs live
music Pro-independence show to take place four days before vote
News
news Video - hailed as 'most original' since Benedict Cumberbatch's
News
i100
Life and Style
The longer David Sedaris had his Fitbit, the further afield his walks took him through the West Sussex countryside
lifeDavid Sedaris: What I learnt from my fitness tracker about the world
Arts and Entertainment
Word master: Self holds up a copy of his novel ‘Umbrella’
booksUnlike 'talented mediocrity' George Orwell, you must approach this writer dictionary in hand
News
i100
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating
    and  

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    SQL Implementation Consultant (VB,C#, SQL, Java, Eclipse, integ

    £40000 - £50000 per annum + benefits+bonus+package: Harrington Starr: SQL Impl...

    SQL Technical Implementation Consultant (Java, BA, Oracle, VBA)

    £45000 - £55000 per annum + Benefits + Bonus: Harrington Starr: SQL Technical ...

    Head of IT (Windows, Server, VMware, SAN, Fidessa, Equities)

    £85000 per annum: Harrington Starr: Head of IT (Windows, Server, VMware, SAN, ...

    Lead C# Developer (.Net, nHibernate, MVC, SQL) Surrey

    £55000 - £60000 per annum + Benefits + Bonus: Harrington Starr: Lead C# Develo...

    Day In a Page

    'I’ll tell you what I would not serve - lamb and potatoes': US ambassador hits out at stodgy British food served at diplomatic dinners

    'I’ll tell you what I would not serve - lamb and potatoes'

    US ambassador hits out at stodgy British food
    Radio Times female powerlist: A 'revolution' in TV gender roles

    A 'revolution' in TV gender roles

    Inside the Radio Times female powerlist
    Endgame: James Frey's literary treasure hunt

    James Frey's literary treasure hunt

    Riddling trilogy could net you $3m
    Fitbit: Because the tingle feels so good

    Fitbit: Because the tingle feels so good

    What David Sedaris learnt about the world from his fitness tracker
    Saudis risk new Muslim division with proposal to move Mohamed’s tomb

    Saudis risk new Muslim division with proposal to move Mohamed’s tomb

    Second-holiest site in Islam attracts millions of pilgrims each year
    Alexander Fury: The designer names to look for at fashion week this season

    The big names to look for this fashion week

    This week, designers begin to show their spring 2015 collections in New York
    Will Self: 'I like Orwell's writing as much as the next talented mediocrity'

    'I like Orwell's writing as much as the next talented mediocrity'

    Will Self takes aim at Orwell's rules for writing plain English
    Meet Afghanistan's middle-class paint-ballers

    Meet Afghanistan's middle-class paint-ballers

    Toy guns proving a popular diversion in a country flooded with the real thing
    Al Pacino wows Venice

    Al Pacino wows Venice

    Ham among the brilliance as actor premieres two films at festival
    Neil Lawson Baker interview: ‘I’ve gained so much from art. It’s only right to give something back’.

    Neil Lawson Baker interview

    ‘I’ve gained so much from art. It’s only right to give something back’.
    The other Mugabe who is lining up for the Zimbabwean presidency

    The other Mugabe who is lining up for the Zimbabwean presidency

    Wife of President Robert Mugabe appears to have her sights set on succeeding her husband
    The model of a gadget launch: Cultivate an atmosphere of mystery and excitement to sell stuff people didn't realise they needed

    The model for a gadget launch

    Cultivate an atmosphere of mystery and excitement to sell stuff people didn't realise they needed
    Alice Roberts: She's done pretty well, for a boffin without a beard

    She's done pretty well, for a boffin without a beard

    Alice Roberts talks about her new book on evolution - and why her early TV work drew flak from (mostly male) colleagues
    Get well soon, Joan Rivers - an inspiration, whether she likes it or not

    Get well soon, Joan Rivers

    She is awful. But she's also wonderful, not in spite of but because of the fact she's forever saying appalling things, argues Ellen E Jones
    Doctor Who Into the Dalek review: A classic sci-fi adventure with all the spectacle of a blockbuster

    A fresh take on an old foe

    Doctor Who Into the Dalek more than compensated for last week's nonsensical offering